The nation’s 10 million cancer survivors require customized follow-up for years that too few now receive, says a major study that calls for oncologists to create a “survivorship plan” to guide every patient’s future health care.
Half of all men and one-third of women in the United States will develop cancer in their lifetimes. Thanks to advances in early detection and treatment, the number who survive has more than tripled over the past three decades.
When active treatment ends, these people’s special needs may be just beginning, said the study, released Monday. Yet, the legacy of physical, psychological and social consequences has largely been ignored by doctors, researchers, even patient-advocacy groups, leaving survivors too often unaware of simmering health risks or struggling to manage them on their own, said the report by the Institute of Medicine.
“There is currently no organized system to link oncology care to primary care,” explained Dr. Sheldon Greenfield of the University of California, Irvine, who led the study for the institute, an arm of the National Academy of Sciences.
Yet, “you fall off a cliff when your treatment ends,” said report co-author Ellen Stovall, president of the National Coalition for Cancer Survivorship, who speaks from personal experience as a two-time survivor.
Beginning new phase
Busy oncologists’ priority is to treat patients and they may have little time for the survivor, while physicians who don’t specialize in cancer care may not know what special needs survivors have.
“Nobody can take custody,” said Stovall, who praises her own doctors but said even they lack information about long-term follow-up for the Hodgkin’s disease that first struck her 33 years ago.
“The doctor says you’re done” with cancer treatment, she added. “But you’re just beginning a whole new phase of your health care. Nobody’s got the roadmap for that.”
Survivors are at risk of their initial cancer returning or a new one forming, and may need not just screening to detect that but also help handling the inevitable fear.
Then there are the lingering health effects that various cancer treatments can cause: problems with mobility or memory, nerve damage, sexual dysfunction or infertility and impaired organ function. There may be distress over cosmetic changes. Other hurdles include keeping health insurance after that costly first cancer bout and discrimination from employers.
Whether long-lasting effects seem acute or subtle, start to emerge just as treatment ends or not until years later, the report is unequivocal: “Importantly, the survivor’s health care is forever altered.”
There are ways to avoid or ameliorate cancer’s late health effects. But survivors, and their future doctors, have to know they’re at risk to take those steps, the report stressed.
For instance, it said, certain dosages of the chemotherapy doxorubicin can damage the heart, and survivors who know they’re at risk can have their heart checked and early signs of failure treated.
Focus on specialized care
Some work is beginning to try to provide that kind of survivor care, sparked by the pediatric cancer community. The Children’s Oncology Group, a leading research group, developed long-term follow-up guidelines that say every child cancer survivor should be given an explicit treatment record — complete with physicians’ addresses and doses of every drug — to provide every doctor who treats them in the future.
And the Lance Armstrong Foundation has begun funding centers at some leading hospitals to focus on specialized survivor care.
Monday’s recommendations by the Institute of Medicine, chartered by Congress to advise the government on medical matters, is sure to add momentum to those still-fledgling efforts.
Among the recommendations:
- Every patient completing cancer treatment should be given a customized “survivorship care plan” to guide future health care.
- That plan should summarize their cancer care down to drug and radiation dosages, cite guidelines for detecting recurrence or new malignancies, and explain long-term consequences of their cancer treatment. It also should discuss prevention of future cancer, and cite the availability of local psychosocial services and legal protections regarding employment and insurance.
- Specialists and primary care providers should coordinate to ensure survivors’ needs are met.
- Health insurers should pay for this report.
- Scientists must improve, or in some case create, guidelines on exactly what screenings are needed for different cancers and their therapies.
- Congress should fund research of survivorship care, to assess their needs and provide evidence for quality care.